Tuesday, December 13, 2011
Wednesday, November 30, 2011
is my 2 front teeth so I can
wish you Merry Christmas!
Both teeth fell out within 10 days of each other! Now that it's stuck in your head, why not take a listen to my Christmas songs on the sidebar of the blog? Play song #2 in honor of Alexander and his beautiful smile. Happy listening!
Monday, November 28, 2011
- HERSHEY®'S and Betty Crocker baking staples to help create Chocolate Snowball and Peanut Butter Blossom cookies for my cookie exchange
- Recipe cards for guests to create their very own holiday cookie recipe book (for 15 guests)
- Custom bakery boxes for my guests to take home their favorite cookies from the exchange (for 15 guests)
- A HERSHEY®'S and Betty Crocker apron as a thank you for hosting
Sunday, November 27, 2011
As Mark and I did our best to position the kids and get them to smile in the same direction, strangers passing by began joining us. They offered encouragement and tried their best to get the kids to cooperate. In the end I got a couple of shots that I love. That's what is important. Not the hundred or so of the nose picking, shoe losing, tights ruining, running, crying, jumping, escaping, dress over her head lifting, funny face making shots that we snapped. (sigh) This is why egg nog was invented. Yum. Enjoy!
embedded video below. If it doesn't appear, refresh your screen or click HERE
Friday, November 4, 2011
photo from our DS playgroup at my house, March 2008, Sophie, Maddy, & Braska pictured
A week has gone by in a flash since my friend Colleen lost her 4 year old Madison to a tragic accident at home. The entire Down syndrome community and beyond has been awash in grief. As I hold my kids even tighter I find the tears starting up again without warning. I cannot even begin to imagine how my friend and the family are coping or how you come back from this.
Maddy's accident has struck a nerve deep inside of me, in a primitive place where a mother's protective instincts have been imprinted in our DNA. As parents, we do the best we can to teach our children about safety. For those of us with children with special needs, the fear of our child being in an accident is heightened. Many of our kids, like Sophie, have little sense of danger but also do not understand the consequences of their actions. This is a very dangerous combination.
Sophie is currently sporting a blackened fingernail as she tried to slip out the door behind me as it was shutting and it got caught. On Monday, as I was getting her out of the van, even as I had her in my grasp, she wriggled out, headed up the street and straight for an oncoming car. This isn't the first of these events, and I know it will not be her last.
Last Friday my friend Colleen left her 4 year old Maddy at home with her 14 year old brother while she drove the younger boy to school. Maddy got out of the house. No one knew until it was too late. Maddy was struck in her driveway and mercifully passed away immediately. This is not Colleen's fault, it is not the brother's fault. It doesn't matter that they were in a large vehicle versus a small car. It was an accident and every parent's worst nightmare. It could happen to anyone.
Although I desperately want to be there to hold my friend up on Sunday for her daughter's services, I cannot travel back to Champaign, IL at this time. So I will join with the rest of the community who are mourning Maddy's passing by honoring her mother's wishes. Please read and share what Collen has requested:
"God wanted her home- while we can't understand and may never understand why-He called her home to Him. She is safe and will always be with us- in our memories, in our hearts, in the breeze, the child's laugh that resonates throughout the place we are at- her spirit remains with those who loved her."
For those wanting to celebrate Maddy's life:
Celebration of Life Service
St. Matthew's Church
Sunday November 6th at 1pm
Balloon launch to take place after service
A meal will be prepared for family and friends following the balloon launch.
PLEASE: Mom does NOT want any flowers/plants- if you would like to make a memorial donation to help with the Celebration costs, you can do so online at:
If you would like to leave a comment about Maddy (memory of her) or words of encouragement for the family, please do so- we will print all comments and put in the memory box for the family.
For those that can't attend: If you want, light a candle for Maddy on Sunday at 1pm and post pic to mom's facebook page or email it to me at ReJenerationS@gmail.com, I will forward it on.
You may also grab the digital blog button below made by our friend Randa Kay (RK) on her daughter's website Braska Bear:
Wednesday, October 26, 2011
Monday, October 24, 2011
Once again Team Sophie rallied for our local Buddy Walk. Here is Alexander with the Star Wars character Boba Fett (he's going as Boba Fett for Halloween this year). Seeing his favorite characters in person proved a bit scary, so all of the pictures are of Alexander with the Star Wars guys in the background, a safe distance away.
Grandma Paula flew in to spend the week with us and walk with Team Sophie. We are so blessed! While we celebrated near Philly, family members who could not make it once again rallied and attended the Buddy Walk in my hometown. Pictures forthcoming (hint, hint Liz!) We are touched beyond words to see such an outpouring of love and support from our family and friends.
We are grateful for our wonderful friends. I met Melissa in the C2P2-EI course that I took through Temple University - Institute on Disabilities. She brought her sweet family and signed each of them up to different teams as so many of our friends had teams participating this year. Melissa and her husband were on Team Sophie. Thank you so much!!!
I got up close in personal with these guys for Alexander. Note to self: Stuffing the sweatshirt front pocket with cameras, kleenex, etc. WILL make you look 7 months pregnant. D'oh!
Team Sophie and Alexander as close as he could muster.
The Buddy Walk at Villanova Stadium is a big event. We have bounce houses, live music, cheerleaders and football players cheering on the teams, face painting, food, exhibitors, a silent auction and raffle, games, Star Wars characters, Berenstain Bears, Elmo, a Tot Lot play area, and more. It truly is a great family fun event.
We even had a chainsaw ice sculpting artist make this right in front of our eyes.
Wednesday, October 12, 2011
Friday, October 7, 2011
The next embedded scene takes place at present day with the Harmons newly moved in and Vivien stripping wallpaper. Please view but be forewarned that this scene contains horrific dialogue.
In the first minute of the show we watch as the doomed preteen twins call Adelaide a freak and then make a sexual overture to her. Clearly in the case of her mother Constance, the writers were going for shock value delivered by a truly hateful villain. She refers to her own daughter in ways that are so evil that I felt verbally pistol whipped while listening to the dialogue. She insults "brown" people and people who are homosexual as if it's normal conversation.
Sunday, September 18, 2011
Our family and our BFFs Maureen, Ras, and my honorary nephew Samuel bought season tickets together. We have some pretty darn good seats.
Our friends had weekend guests, so just the guys came along this time.
Thanks to the Christmas in July sale at the bookstore, our family has a ridiculous amount of school apparel. There's nothing like putting on a pair of brand new fuzzy sweat pants and sweat shirt on a chilly fall afternoon.
The store didn't have a cheerleader's uniform in Helena's size, so we improvised. At one end of the field they have a kid's area with bounce houses, a bouncy obstacle course, a coloring booth, and other fun activities.
These kid friendly activities and 3 bags of popcorn kept our crew happy for the entire game. (mostly). I didn't know if we would make it through the whole game and since our team got beat up pretty bad, I'd say that was the highlight of the day.
Wednesday, September 14, 2011
In just nine years, this Buddy Walk® has raised over $1.9 million for the (Down syndrome) Trisomy 21 Program at The Children's Hospital of Philadelphia. By working together we can make this wonderful event even more successful. There are many ways to get involved, even if you can't join us on the walk. For more information including the schedule of events, registration information, and donation instructions, visit our page at:
On behalf of our family and Team Sophie, we thank you for your support!
Other ways to support Team Sophie even if you cannot walk with us include:
Tuesday, September 13, 2011
Saturday, September 10, 2011
My little guy is in school ALL day. No more sleeping in has been a BIG adjustment in his little world. He eats lunch in the cafeteria. He has TWO recesses (his favorite part of school). The students all have their own desks instead of tables like they have in kindergarten.
It was a foggy and soggy first day. We have friends whose kid's schools have been closed due to the severe flooding and power outages that are widespread out here. Trees that are heavy with water have been falling over as the saturated ground can no longer support them. Our basement has been flooded. This is the wettest it has ever been in recorded history and let me tell you, it's a mess.
All of the classrooms have Smart Boards, which I was very impressed by. See the socks hung from the ceiling that will blow when the furnace kicks on? So cute.
Thursday, September 8, 2011
This year we are in a new school district. Even though we only moved down the road, we crossed the County line. Sophie's old preschool was not an option in our new school district, but besides that, her mama had gone to school (C2P2-EI through Temple University Institute on Disabilities) and had been bitten by the Inclusion bug. This year Sophie is attending a typical neighborhood preschool. Let me explain.
First, let me start with what I believe Inclusion to be. Inclusion means that ALL children have the right to be educated in their neighborhood community school with their peers. This does not mean that children with IEPs and disabilities are dumped in a typical classroom without appropriate services and supports. This does not mean that Sophie will be forced to take Algebra in high school, just to say she's included.
It means that on an Individual basis (as in the individual in IEP) the team will assess Sophie's needs and design a plan with supports to make it possible for Sophie to attend a typical school. Inclusion looks different for every child. For some, it may mean attending art class, lunch, and recess with typically developing peers. For others, it may mean being in the typical class full time. (I hate the word typical, but that's what we've got)
For Sophie, it means that she is in her class 99% of the time. Her speech, occupational, physical therapists and her itinerant teacher (like a developmental therapist) work with her while she is IN class. Her ST participates in story/circle time. Her PT is there when the kids go to the playground, etc. In the natural class environment, her team incorporates extra support. Studies have proven that Inclusion not only works for our kids with disabilities, but the benefits afforded to their typically developing peers are enormous. This is the ideal Inclusionary environment. I'll be the first to say that not all schools are prepared to offer this level of support which may mean that forcing an unsupported version of Inclusion would be harmful to the student.
This year we have chosen to let Sophie ride a bus to school. Believe me, this was a heart wrenching, long drawn-out decision, but the best one for our family. Before putting our daughter on a bus to school, I spoke with the Director of Transportation (I always go to the top) and he designed a bus orientation for her. They already do orientations for kindergartners, but it hadn't occurred to them to do this for preschoolers with IEPs. They were wonderful! I took my 3 kids to the bus garage where we met the Director and Sophie's bus driver Miss Daisy. The kids got to explore the brand new, full sized bus. We fitted Sophie's safety seat to her (a specially designed, brand new piece of equipment that works much better than a car seat and will ONLY be used by Soph). We were sent home with bus safety coloring books and a Pooh Bear bus safety video. Awesome.
Sophie started school last Thursday but the bus wasn't ready until this week, so we drove her for the first 2 days. This gave her siblings a chance to tour her school on her 1st day. After the 1st day we received a call from the school district. They wanted to add a Personal Care Assistant (PCA) to Sophie's team. She was escaping class and they were concerned for her safety. (ha!) I had to hold back the laughter. This was exactly what we forewarned them about. I have many friends who have to fight for a PCA. Our school district pleaded with us to allow one. I find that hilarious and ironic in a dark and messed up way that only other special needs parents can truly understand.
Of course I met with Sophie's new PCA, who is fabulous. Her job is to keep an eye out for Sophie but not interfere with her play and learning. She also helps with lunch, diapering, and transitions from one activity to the next. She is a Russian angel and we already love her.
The bus has been an experience for all of us. We gave a small token of thanks in the form of flowers and chocolates (believe me bribes are not only the way to go, but they WORK)! On the first day we had thick fog and flooding caused many roads to be closed and traffic to be horrible. The ride that should have taken 20 minutes max was 45 (I know because I went to her school) and Sophie freaked out. Bad. She cried so hard she broke out in petechia (broken blood vessels all over her face and upper torso that only happens at scary doctor's appointments and procedures). Miss Daisy felt so horrible that she demanded a change in the route to the Director, meaning that Sophie would go straight to school versus first picking up another child who attends a different school. Then she went to the toy store and spent her own money on toys for Sophie to have on the bus. She gave me her personal cell number and assurances that she's caring for my baby like she is her own. She tenderly wipes her tears and nose. We love Miss Daisy.
On Sophie's 2nd day on the bus, while I was strapping her in, a very rude and self-important motorist began wailing on her horn as she was not able to pass the bus. We were not taking pictures. We were not dawdling or chatting (we did that on the 1st day). I was simply strapping my daughter in her safety seat. Mark and I approached this woman to explain but she brushed us off with a "I have no time to talk. I have to get to work." After explaining to her that she is a witch with a b as she sped away (not my proudest moment, but I don't take it back) we began scheming plans for how to deal with her in the future. Plans include video taping this unbelievably rude behavior, following her to her work and later emailing her boss the video, sending it to the local tv stations, and uploading it to youtube. My friends on fb offered to form a posse. We could have signs and pass out "jerk awards" or slap "jerk award" stickers on the bumpers of anyone else who dares to act this way.
In any case, we are pleased with Sophie's preschool despite being very close to going to Due Process until we agreed on her placement. I know that what you really want are pictures, so here you go. I couldn't include our videos as they showed the bus #s and school district. Friend me on fb if you would like to see them. If the slide show isn't below, hit refresh or click the link HERE.
embedded video below
Saturday, August 27, 2011
Even Mark had no luck with the D batteries though. Our big flashlight takes D, but we have plenty of candles. (I just found a 4 pack in our junk drawer! woo-hoo)
See -- family and friends back in Iowa. This is just a fraction of our food supply. The van is gassed up, the outside stuff is packed away. Laundry is (almost) finished. Mark is working on raising stored stuff up in the basement. Down spouts are extended. Everything that needs charging is charged. The bath tub will be filled. We have some cash. We're set.
The projected sustained winds are 58+mph for our area during the worst part of the storm. It will be a gnarly, but we're safe. We'll keep you posted as we can.
Friday, August 26, 2011
Tuesday, August 23, 2011
My organization has the corner office on the 6th floor and I am working alone. When the shaking got really bad I ran out of there afraid that the windows would break or that the office would fall off of the building. Yes, it was that startling. Very near to this building, office windows did shatter, but no reports of other damages have been made. I joined the others in the organization on my building's same floor and we evacuated down the stairwell and tried (often in vain) to get through to loved ones on the phone.
There is something particularly shocking to the system when things like this occur, at least for me. It hit with no warning (as they do) but no one knew for sure if it was an earthquake or terrorist attack. At first I was startled, then scared, then really wishing I wasn't so far from home.
Our phones have been very spotty but texting and on-line services like fb are working.
Mark checked out our house for damage and reports some cracks in the paint around the windows. I don't know if they were already there or are new. He also reports that Alexander's old timey alarm clock that was broken is now working again, but that's it. I just remembered that my nephew Austin predicted the earthquake in Illinois in 2008 and I just got a text from my little sister that she recently had just had a nightmare about an earthquake and Sophie was in it. Come to think of it, I didn't sleep well last night due to nightmares. Weirdness. I guess we're all a little wacky.
As there may be aftershocks I will attempt to get home soon. It's an early rush hour as many buildings have been evacuated. Should be an interesting ride home on the train today.
On Sunday hurricane Irene is expected to march up our way.
I think I'll stop by my favorite wine store on the way home.
Be safe out there friends!
local story HERE
Sunday, August 21, 2011
I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention, as I have grown accustomed to the curious eyes of onlookers. Our daughter was born 7 ½ years ago and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to— they just didn’t unfold in the way we had imagined or planned.
I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber.
I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked, was your husband.
I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.
If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honour your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.
I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.
I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates……..even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.
I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.
I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.
I would tell you to seek out other mothers like yourself. This is, indeed, the road less travelled and you will feel very alone along the way especially in the company of healthy children and their parents. Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.
I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.
I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to tell him that she has gained 4oz. because weight gain is always a struggle with our children.
I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.
I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.
I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.
I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people— the cashier at the grocery store or your insurance broker or even your hair stylist— will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bullshit.
I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.
I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.
I would tell you that you will recognize her because she is you from 7 ½ years ago. And you will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.
But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.
I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.
June 29th 2011
Now online at www.WhatIWouldTellYou.com
© Copyright 2011 by Julie A. Keon. All rights reserved.
re-printed with permission
Thursday, July 21, 2011
Monday, July 11, 2011
The Quaker designed prison opened in 1829 remained in use for 142 years. As a lover of history, ghosts lore, and architecture, this tour was a feast for the senses. My dear Carlin and I spent an afternoon wandering from cell to cell, trying to imagine what it must have been like for those who did hard time there. Solitude with only the Eye of God (small opening in the ceiling) to keep companion to their thoughts, they did their time in absolute silence to repent their sins. That is until demand over-ruled supply, cells doubled their occupancy, and stories leaked of parties complete with booze supplied by the staff, even during prohibition.
If ever I needed impetus to save for a real camera and take photography classes, this place is reason enough. In fact, as our wedding anniversary is Bastille Day (July 14th), and there is a street festival to commemorate it outside the prison walls, I think our return will be soon. Revelers are encouraged to dress in period costume and bring a squirt gun to re-enact the storming of the Bastille. Of course, we could always return for the haunt this fall, when they turn it into a haunted house which is consistently rated America's scariest haunted house. In fact, TAPS filmed an episode of Ghost Hunters there (view HERE).
Carlin and I enjoyed dinner at a lovely Italian place after our tour. I love this photo of her.
Here are my photos, see below (refresh this page if you don't see the slideshow) or better yet:
Sunday, July 10, 2011
I love a parade! A selling point for me in buying this house was the family friendly neighborhood where neighbors actually know each other, look out for one another, and know how to throw a great party. For over 60 years they have hosted a 4th of July parade that travels right in front of our new home.
I'm a big fan of parties, especially parties with a theme. Throwing myself into party planning mode is a guilty pleasure and I am darn good at it. In the few weeks I had between the move and the 4th, I stocked up on bunting, patriotic stars (including star ice cube trays), and planned the menu. Lacking a punch bowl, I found a cheesy nostalgia fountain on-line. I just had to buy two as one was for 2 gallons (yes 2 gallons) of sangria and one was for punch. They flow from 3 tiers and light up and make me happy.
We were blessed to have a great turn out of friends and even family that travelled from Iowa. Expecting just a bunch of kids on decorated bicycles, we were pleasantly surprised with bagpipers, bands, antique cars and trucks, fire trucks, steppers, clowns, and floats. An honest to goodness parade!
Alexander's bestie from his last school attended, making for a very happy boy.
Despite the summer heat, the morning parade was grand and the sangria which soaked in fruit and brandy overnight was scrumptious.
Our good friends surprised us all with their new edition, Ms. Kimberly, 10 days old! I momentarily forgot my hosting duties as I snuggled her, breathed in her sweet baby scent, and admired her dark curly hair.
supplying sangria to the parade marchers
We were overflowing with gorgeous families.
Sister and Papa
A year ago we walked out on faith and moved across the country to a new city. For years I had been praying for a job that would fulfill my husband, in a place that would nourish our family, and enrich our lives. We've found so much more than that in our little corner of the world.
This place feels like a small town in the mid-west, yet is just down the road from the big city. After the parade, the park around the corner hosted music, free hot dogs, a dunk tank, bouncy houses, face painting, sack races, baseball, and train rides. Alexander and our buddy Sy rode the caboose.
Although our lives are busier than we might like, we are happy. We have finally found our Home and we are putting down roots. Join us next 4th of July for our 2nd annual parade watching party!